What do people think the best treatme... - Hidradenitis Supp...

Hidradenitis Suppurativa Support

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What do people think the best treatment is for hs?

kirbyderby profile image
9 Replies

Hey. I first noticed I had this problem when I was 13, didn't have a clue what it was. I'm now 21 an got diagnosed 3 months ago by my gp. Have been putting off telling anyone about it for all that time because I was so embarrassed by it. So as you can imagine, because I left it so many years to tell someone, my scarring is really bad. I've been put on doxycyline an have been on it for the past 3 months but I've not noticed any change. Can anyone recommend a good antibiotic that really helps it? Also what treatment is there for the scarring?

I'm doing a beauty therapy course at college an feel embarrassed to tell the tutor's as we have been told we will have to practice waxing each other's armpits, bikini waxing etc an I'm too embarrassed to get it out in front of other girls in the class an also don't think it's a good idea to wax those areas where the scarring us so bad :( does anyone have some advice they could give me? X

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kirbyderby
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juliewho profile image
juliewho

i am on lymecycline and it is doing ok , under breast not so good but elsewhere good. the hibi cleanse is working well and seems to have stopped it in the groin and smell under arms. i to never told anyone until just recently so i no what you are saying. i haven't even shaved under my arms or elsewhere for fear of making it worse , but it has worked because i haven't had any serious problems under the arms for years .as for the scarring not sure cos i have another inflammotory disease called pyodermagangrenosum so i can't get laser treatment or surgery .

kirbyderby profile image
kirbyderby

Aww I get it under my arms groin an on my waist. Not had it under breasts. I will have to speak to the doctor I think as this doxycyline really isn't doing anything. Is it a long term thing? Or can it just suddenly go in a few years? Will it be a life thing? Like will I have to take medication for it forever? My worst scarring is under my arms an tummy :(

I fear that an don't want to shave them but then I get conscious an I'm worried I will be made to be waxed on at college :(

I will look the lymecyline up thankyou

juliewho profile image
juliewho in reply to kirbyderby

from what i read it can be a long term thing , but also it can go into remission i have had it for a lot of years but i never sought treatment. do you wear your clothes tightly?.i have also read that sometimes they give the pill so it controls your hormones, mine tends to flare around the time of my period. have you seen a dermatologist for it? i would avoid the waxing if i were you. there are many treatments you just need to find the right one and be persistent and learn to listen to your body and what aggravates it

Dreamer2322 profile image
Dreamer2322

If I were you, I would just tell them that those skin areas are sensitive due to your skin disease. Tell them they can wax your legs. Sometimes its better to be honest, I used to be so afraid but fearing and that feeling of embarrassment really made me depressed and gave me anxiety. You just gotta hold your head up and let them know, you'd be surprised how understanding people can be. You'll always come across those rude and not understanding people from time to time. But you can't let them effect you. You don't want to wax and then have the hidradenitis act up. Nowadays, I just let it grow and when I gets long I shave with a brand new clean razor everytime. For pain I normally always have big band aids and band aid of all sizes at home cause it helps lessen pain cause it keeps my skin from rubbing. A hot towel helps a bit, but I usually just rest, and distract myself from the pain by watching tv or something. I hope some of this advice helps you. 😊

Tookibri profile image
Tookibri

I am 26, I am a beauty therapy student, and I have been living with HS for 13 years. So first and foremost what I want to say is that you are not alone.

When it came time to start my waxing class I was also filled with dread and embarrassment. One of the hardest things I have ever had to do was take my lecturer aside and tell her about my condition. I went one step further and actually showed her the extent of the scarring and flare ups I have under my arm pits. She was amazing. She did not judge me or make me feel ashamed. Instead she was completely sympathetic and assured me I would not have to have any waxing treatments in my affected areas and no body else in the class needed to know about it. This actually helped me come to terms with my HS and I voluntarily began disclosing information about my condition to my classmates. Dont get me wrong, it was hard and I prepared myself for what I thought would be inevitable revulsion but instead my honesty was rewarded with understanding and other peoples desire to help me in any way they could. A few girls even began telling me about their health issues and how it affected them.

You wouldnt look down on someone with diabetes or epilepsy and to date, no one has looked down on me because of my HS. I am still experimenting with different methods of treating my condition, without the help of antibiotics (which were not really helpful in my case either). Currently I am using a Dermalogica body exfoliating cloth with my antibacterial soap a couple of times a week to help prevent and treat follicle blockages. After I bathe I rub organic virgin coconut oil into my skin. The natural acids help reduce inflammation and bacteria, but you shouldnt use it more than a couple of times a week or it will make things worse. The other product I swear by is Bepanthan. You can buy it in the baby care section of most supermarkets. Its a gentle, moisturising antibacterial cream that will significantly heal any pustule overnight. My theory is that applying non comedogenic occludents reduces my sebaceous activity and retards bacterial growth. Talcum powder also helps by absorbing excess sweat from the areas. I am also going to start using witch hazel to see how that goes too.

The best advise I can give you is to talk to your lecturer about your condition. They are a beauty therapist after all, and skin is their business. There are some other treatments I'm excited to try this year as we embark on the body treatment subject and I shall post my experiences here when I can. Ultimately, I think having this chronic skin condition will make me a better therapist as I have first hand knowledge of just how life changing helping someone with a debilitating condition like this can be. Be brave and dont let fear stop you from doing what you want to do in your life. I hope this helps and you in turn can help others by being a kick ass therapist who can encourage others to get the help they need.

Tookibri profile image
Tookibri

Thats really interesting. I have tried wiping tea tree oil over the affected area and it did help a bit, but it ever cleared up. Although i was not rubbing the oil into any open wounds. I will give that a go. Thanks :)

flossy1970 profile image
flossy1970

I have every sympathy Kirby being a sufferer of HS myself, I was given lymecycline which for me were amazing. For the scarring I hear Bio oil is really good.

velmc profile image
velmc

Really interested in this. Sitting crying with pain at moment 3 open sores under breast at moment 3 weeks of agony and wounds being dressed.daily ready to rip my hair out. Fed up with GPS who are not interested and dismissive. Never been so bad . Feel a bit more sane after finding this group

Jessicaelizabeth profile image
Jessicaelizabeth

Hello,

I had HS in the groin region and I am in spiriton (spirolactone) to keep the flair-ups at bay. It has to do with the oil or something, it’s been working really well and it looks like I am healing up now. For the flair ups I take app-cephalex (cephalexin) 500mg and this also works really well to make the flair up go away within a day or 2.

I had a question though, I recently started going to a wax bar and I find myself each time I get a wax trying to explain my HS. Even if I get the same waxologist I still explain it again (no matter what I repeat myself at beginning of service) because I am ambarassed and I don’t want them to see it and think I have a contagious STD or something. My question is, how could I just go about telling them I have HS and it’s not contagious and it’s not a STD or STI in short form? Like any ideas on just how to say it? Or how to bring it up? Because I feel I’m awkward about it when I just start saying “I just wanted you to know that like I have this thing called “HS” *but I say long form even though it’s hard to say but I have to say it because they won’t know the term HS* it’s not contagious or anything it has to do with hair follicles and so on. It just sounds so bad once I even say “it’s not contagious or anything”

I don’t know guy, please help on how to tell a waxologist about what they will see down there! Or what I should write in the “note” section when making an appointment online for the girl who does the service.

Thanks

Jessica

P.s I hope I made sense I feel I don’t know how to express myself when explaining situations via text. Lol sorry for long babbling

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